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European Haemophilia Consortium. A Strategy for Women with Bleeding Disorder The Irish Experience Roundtable of Stakeholders 21st June 2011 – Brussels Debbie Greene Irish Haemophilia Society. National Register. Of the 918 people in Ireland known to have von Willebrands

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european haemophilia consortium

European Haemophilia Consortium

A Strategy for Women with Bleeding Disorder

The Irish Experience

Roundtable of Stakeholders 21st June 2011 – Brussels

Debbie Greene

Irish Haemophilia Society

slide3
Of the 918 people in Ireland

known to have von Willebrands

Disease 537 are female.

Many do not require therapy

on a regular basis but knowing

about their bleeding disorder

is vital.

information outreach strategies
Information Outreach Strategies

Include lectures on Women and Bleeding Disorders at most Irish Haemophilia Society conferences.

slide5
Produced special

publication on Women and Bleeding Disorders

in 2010.

Distribution list:

All registered members

Women with Bleeding Disorders attending haemophila centres.

All maternity hospitals.

slide6
Produced special

publication on Rare Bleeding Disorders in 2010.

Distribution list:

All registered members.

All with Rare Bleeding Disorders registered at haemophilia centres.

slide7
Organised specific conferences on Women and Bleeding Disorders on World Haemophilia Day on 17 April in Dublin & on 16 April in Cork in 2011.
slide8
Mailshot to all members of the Irish Haemophilia Society.

Advertised in Haemophilia Treatment Centres by production of specific flyers and posters.

Mailshot to all obstetricians and e-mailed PDF copy of our publication on Women and Bleeding Disorders.

How did we promote the meetings?

slide11
Publication Women and Bleeding Disorders was sent to all maternity hospitals.

Repeat orders received from some hospitals.

slide12
Advertised our Information Days at all maternity hospitals. This resulted in midwives and women with known or potential bleeding disorders attending conferences.
slide13
All Publications and information materials are downloadable from website.

Facebook.

Discussion Forum.

www.haemophilia.ie

slide14
It is vitally important that women with bleeding disorders understand their condition, and the potential impact it may have on them during menstruation, pregnancy, menopause and surgery.

Education and knowledge is power.

slide15

Irish Haemophilia Society

Office Team

From left: Debbie Greene, Nina Storey, Anne Duffy, Brian O’Mahony, Nuala McAuley, Fiona Brennan and Declan Noone.

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